Altered States

My seizures are gone now. Many people diagnosed under the age of 20 find their seizures pass; so it was with me. Epilepsy is not an uncommon condition: according to Epilepsy Action, there are nearly half a million people in the UK with epilepsy, or one in every 131 people. One in twenty people will have a single seizure at some time in their lives. There is no “cure” for epilepsy, though with the right treatment 70 percent of people with epilepsy could have their seizures completely controlled. Those are good enough reasons to be interested in the subject, but they are not, in truth, the reasons that interest me. I wonder if you’ll believe me when I tell you I miss them; it surprises me to find myself saying it, but I say it all the same. I am swimming. This, I am good at: I cut through the cool body of the lake with my own body, my head underwater, mostly, so the sounds from the dock – footsteps, splashing, the shouts of the girls and the camp counsellors – disappear. Back and forth, along the length of the dock but as far away from it as it is possible to get, right at the roped and buoyed perimeter of this square of Maine lake. At my last camp (I hated that one, too) I won an award, because it was the kind of right-on place that found an award for everyone, no matter how hopeless they were. “Most Dedicated Swimmer.” It still hangs on the wall of my parents’ apartment, a relentlessly cheerful wooden square decorated with stuck-on sand and glitter paint.

Here, at this camp, I’m still the most dedicated swimmer. In the water, you can get away, from tennis lessons, from team sports, from the weird prohibition on saying the word “rain” lest you bring the stuff down. I like the rain. When there’s rain, there’s no tennis. Still, when it rains you can’t swim because you might get struck by lightning, so there are drawbacks. Back and forth, forth and back, the whole length of the dock, the sun on my back. I’m eleven.

Then something changes. What is it? I am afraid. I am afraid. Not nervous, not like I’ve been before here, or at other times, in other places. Fear comes over me in a new way, completely and suddenly, as if a motorboat has swished by and its wake has broken over my skull. I have to stop swimming, I’m afraid I won’t remember how to swim, I jerk upright and tread water, and it seems to me that the dock, the girls, the pine shore and lake house all recede from me until the distance between my self and anything else is unbridgeable. There’s water in my mouth, I remember to spit, my heart beats hard and I don’t know, in this instant, if I will ever escape from this prison of fear, or if the glass which has come between me and the rest of the world can ever be broken. The late-afternoon sunlight is brilliant; the ripples on the lake surface perfect, slow. Listen to them, laughing. Who are they? Who am I? I am eleven and now I know horror. Now I know dread.

Then it stops.

I swim to the dock and cling to the ladder, the scent of its steel in my throat and nose. Maybe someone’s behind me, I have to get out because she wants to, I climb up onto land and I’m tired, as if I’d been swimming for hours and hours. I haven’t. Free swim’s not nearly over. I sit on the dock, the wood pinching my thighs, and stare out at the lake, my swimming cap tight against my temples and the nape of my neck.

That was the first time. It happened twice more before I took myself to the nice doctor who was in charge of the camp’s infirmary that year. I always liked the infirmary, where, if you got to stay there, you could read as long as you wanted, but with this – whatever this was – I resisted a visit for as long as I could. I felt strange enough at summer camp. Even at eleven years old, I didn’t want anyone telling me I’d gone crazy.

t could have been different for me, of course. Epilepsy is different for everyone. It is one of the oldest recognized conditions – it’s not the done thing to call it a disease — to afflict or affect humanity. Sufferers may have included King Saul and Herakles, and certainly included Julius Caesar, whose “falling sickness” was noted long before Shakespeare. “A terrible thing is the frightful clearness with which it manifests itself and the rapture with which it fills you,” Fyodor Dostoevsky wrote. “If this state were to last more than five seconds, the soul could not endure it and would have to disappear. During these five seconds I live a whole human existence, and for that I would give my whole life and not think I was paying too dearly.”

It would be wrong to call Dostoevsky lucky; yet the seizures from which he suffered (he noted over 100 of them in the last two decades of his life) were apparently preceded by an ecstatic aura, a “happiness that is impossible in an ordinary state”. Dostoevsky’s ecstatic happiness, the result of anomalous electrical activity in the brain’s temporal lobe, is the corollary of the fear I felt when my seizures overtook me. For while at first I supposed I was afraid because something new and strange was altering my perception, I later understood – when I became accustomed, though that’s not quite right word, to my seizures – that fear, the pure sensation of fear, was one of the ways in which they manifested themselves. The fear was physical, neurological: there was nothing to be afraid of. There was no big bear, for instance, running suddenly running after me; I would not die from my seizures. They were harmless — and yet, I was, always, afraid.

The kindly camp doctor, whose name I no longer recall, spotted what the situation might be; not long after the summer had ended and I was (thank God) back at school in New York, I headed uptown with my mother to Columbia Presbyterian Hospital, where I was taken into the care of a paediatric neurologist. Things I remember: not knowing why I had to touch my nose, then touch his finger, then touch my nose again and then his finger again. This was different than a regular doctor’s appointment. I remember being sent for an electroencephalogram, my head made a Medusa’s by a tangle of wires, how long it took me to get the gunk they attached the wires with out of my hair afterwards. I remember how calm my parents were, though when I think back I wonder if that was for my sake. For there seemed to be some sheen around this condition – not illness, condition – some aura of alarm. My own aura – the sense that signals a seizure – was, as I came to know, a metal scent lodged high back behind the bridge of my nose. I could taste it too, sometimes, like a steel tongue depressor; it offered a few milliseconds warning and the illusion that avoidance might be possible. The aura was like the sense my doctor tried (gently) to impart, that some were still prone to react medievally to the mention of what was now mine. He didn’t tell me or my parents to keep quiet. But he told us to be careful. I had never thought of being careful in this way before. It’s a care that haunts the literary representation of epilepsy; Dostoevsky’s Prince Myshkin may be a holy fool, but in George Eliot’s Silas Marner the shift from divine grace to evidence of possession is a swift one.

My neurologist told me that the seizures – simple partial seizures is the term, when the person experiencing the seizure remains conscious and fully aware – were happening in the temporal lobe of my brain; this would account for the intense sensation of fear, and the occasionally vivid sense of déjà vu. Later I’d sometimes, during a seizure, imagine that I had predicted this very seizure at this very time. My neurologist prescribed medication, carbamazepine, which never seemed to work particularly well. The seizures still came, maybe less frequently, but it was hard to tell. Usually they were brief, a minute or two, although I found that one minute can feel like a thousand years. It was worst to be alone if one occurred, for me to be in a room in someone else’s house, say, with everyone downstairs, in the garden, out for a walk. Then, once or twice, I thought the fear would kill me, though I couldn’t have said it was particularly helpful to have my nearest and dearest around either. Nothing helped. There was only awfulness, an awfulness impossible to describe, though over the years I’ve come to think I’m pretty good at describing things.

That impossibility has haunted me. Recently, I tried this: “Imagine you come into a room. It looks like a pleasant room. The furniture’s nice and it’s clean and orderly. It seems comfortable and even homely. Now, go out of the room again. The person – your friend, or a stranger – who’s led you into the room now reveals what had been kept hidden before: not long ago, there was a murder in that room. All the evidence has gone, of course, but the echo of the act remains. That kind of stain can never be truly erased. Go back into the room. What do you think of it now? It is not so comfortable, not so homely. You want to leave and you turn to go but you find that your friend – or the stranger – has locked the door from the outside. There is no escape. You are imprisoned with the echo of disaster; you can only wait it out. Perhaps the door will be unlocked, perhaps it will not. There is no way to know.”

It’s still not right, this description. But for now it will have to do. It comes from the novel I’ve just written – Seizure, as it happens to be called. When people ask me what the novel’s about, I find it hard to answer. But one of its two central characters has seizures that mirror mine, and I like to think the book threads a way between seizure and life, between story and life. I’d like to thing the truth lies along these boundaries.

My seizures are gone now. Many people diagnosed under the age of 20 find their seizures pass; so it was with me. Epilepsy is not an uncommon condition: according to Epilepsy Action, there are nearly half a million people in the UK with epilepsy, or one in every 131 people. One in twenty people will have a single seizure at some time in their lives. There is no “cure” for epilepsy, though with the right treatment 70 percent of people with epilepsy could have their seizures completely controlled. Those are good enough reasons to be interested in the subject, but they are not, in truth, the reasons that interest me. I wonder if you’ll believe me when I tell you I miss them; it surprises me to find myself saying it, but I say it all the same.
I say it because while my seizures offered me something very different from Dostoevsky’s ecstasy, what they gave me was rich and strange. To most of us, most of the time, the world seems a stable place – not politically stable, or meteorologically stable, or even emotionally stable, but existentially stable, epistemologically stable. We believe we perceive the world as it exists: that somehow what we see (as we walk down the street, as we watch the evening news, as we lie in the bath) must be “true”, in some sense. Reality, we must believe, has an existence outside our own perception of it.

Yet during my seizures, I can assure you, I was not certain of that. The world (the street, the evening news, the bath) was “the same” – I knew that – and yet it was not “the same”. I knew that too. Small wonder I became fascinated with the alternative universes depicted by Oliver Sacks in The Man Who Mistook His Wife for a Hat. I knew nothing of Sacks’ work when as a 17-year-old I spent what was to me a large sum on the hardback edition of this book – the first and only time I’ve bought a book on the strength of its title alone. Yet inside, I found something I seemed to understand: the neurologist’s sympathetic depiction of men and women whose worlds had been altered by changes in their brains. The eponymous case is that of a man who suffers from visual agnosia: familiar objects are no longer recognisable to him, and once, in Sacks’ office, he perceives his wife’s head as his hat. There is the case of Jimmy G.: Korsakoff’s syndrome means he can remember nothing of his life since his demobilization after the Second World War. “To be ourselves we must have ourselves,” Sacks writes. “possess, if need be re-possess, our life stories. We must ‘recollect’ ourselves: recollect the inner drama, the narrative, of ourselves. A man needs such a narrative, a continuous inner narrative, to maintain his identity, his self.”

If that narrative is interrupted – even for moments – it gives a different vantage point on one’s perception of the world; that, I suppose, is what I have tried to explore in my novel. There was a time in my life when, at any moment, I could, as it appeared, drop through the floor of the world into one which, although it matched this one in every particular, was not at all the same. I often wondered what would happen if I got stuck – as once or twice I feared I might, when the seizures felt as if they went on and on and would not release me from their grasp – in this other world. Would it become “real”? Would what I had accepted as “real” gain the dreamlike quality of seizure recollected? There is no way to know. And so I have returned to those alternating worlds in my fiction, to see if I can show how they may interlock.

In one sense there is no mystery to epilepsy: there is no reason for it to be shrouded, as once it was, with superstition or fear. And yet, like the human condition itself, it can cause one to look afresh at a great mystery. Does the world make us or do we make the world? The electric glare of seizure illuminates the question as if by lightning, in jagged sparks.